General confusion re treatments

Hi there - am a newbie and don’t really know format etc and am just learning.

I am in between a rock and a hard place at the moment. I have been off work for approx 10 months due to onset of what was diagnosed in May as chronic migraine - silent That much information was gleaned, ie. neurologist told me it was due to migraine - I have since then gone on the internet and looked it up learning so much more. I now think that I have chronic silent migraine/acephalgic but it seems to be more vestibular.

state of play re onset of symptoms - migraine with pain history over the last seven years or so, seemed to be a pattern of a saturday, a decompression if you will. I had a stressful marriage, financial issues, busy job and life. It made sense to be decompressing. Triggers at other times seemed to be missing meals, emotion. Presentation was often right sided, pressure behind the eye - not always the right, sometimes left. The pressure/pain would build and spread throughout my skull and the pain/nausea would render me immobile for a time in the hallway on the floor or in the bathroom. Some relief would come from vomiting and then I’d be able to get to bed to sleep. I’d feel exhausted after I woke - say three to four hours later, but relieved of the more intense pain. The migraines seemed to reduce in frequency for approx three years and then in 2012 from summer onwards returned. Approximately one bad one in every few weeks period, with lighter migraines in between. The last two in November/December timescale (hormones do seem to play a part but not defining) were particularly bad with light and sound sensitiity, on the bathroom floor for around two hours, severe numbness/tingling in the face and right upper and lower body. vomiting did not relieve the nausea/pain i.e I couldn’t vomit beyond wretching, and when I did there was still no relief. Got to my bed eventually but was still there when I woke.

January time came and I was hit with dizziness, nausea and wretching, vomiting regularly. Thought it was a bug, stayed off work for a week. It didn’t so I returned. Throughout the next three months the pattern of wretching and vomiting continued up to 15 times per day. In that time due to pins and needles and body sensations I had a head ct and mri, was sent to stroke consultant, had full body Mri - all clear. In april I was admitted to the hospital due to severe pins and needles, I thought I was possibly at risk of stroke. All down right side mainly with numbness in the face and legs particularly. Grip strength was affected. I had problems with aching neck and back shoulders, speech, word finding and generally slow cognitive processing.

After being discharged after a night I thought I would return to work however the fatigue and dizziness were very bad. My balance has always been bad but the dizziness made it worse. The fatigue built up until I was sleeping approx 13-14 hours and then 4 or 5 throughout the day. Dynamically I was affected but it seemed to be so much worse sitting, to the point of lying in the chair. My muscle tone seemed weaker and I could not hold my head up. A conversation sitting at a table was exhausting and my throat was sore. there was aching in my oseophagus and throat and mouth and shoulders and I would crumple’ after a ten minute conversation, having to go to bed. this has continued throughout although is not as bad at the moment. i went onto ibuprofen to relieve the pain which I’m still on.

I’ve cut out cheese chocolate sugar and caffine, and marmite. this seems to have helped the throat/mouth sensitivity. In june I was prescribed topiramte 100mg which i was on until mid december. I made the decision to come off the medication as the side effects exacerbated my symptoms. no appetite - crying constantly for the time I was on it, laterally having mind blanks and couldn’t say beyond three words without forgetting what i was saying or being able to see what i was talking about but not produce it in speech. I at times don’t understand what words are being said to me and switch words around or say the wrong thing. I think that part is part of the migraine attack but was made worse. The fatigue, breathlessness and constant aching were bad.

Since coming off the drugs i had two and half weeks of really great energy and such a change in my mood state, there is still anxiety but not as often crying, only crumpling when fatigued. However since then the symptoms are returning, the nausea, dizziness, light and audio sensitivity, aching muscles/stiffness. Pressure behind both eyes which is indicative of a migraine attack for me, dull migraine pain always present. One day in bed due to migraine. Nausea is increasing and I want to stop the pattern before it gets to the fatigue level and not being able to stand or sit as it has done.

My dilemma is this - I am a reductionist when it comes to meds, I don’t want to go onto duloxetine as my doctor is advising 160mg due to the horrible things I’ve read for what might be very little benefit. I have an apt with a homeopath on Monday but need to make an apt with gp as sick line is running out. I am so scared of going into a medical induced fog with difficulty as i did with topiramate, I would rather just deal with the symptoms to an extent as I can function just now however I can feel they are getting worse and desperately want to get back to work. I know as soon as I go into an environment where you are constantly switching between screens phones and situations that the vertigo will get worse.

I don’t know if anyone can help or advise me. My GP has been great but doesn’t really know which way to go other than duloxetine. I want the symptoms to stop, or at least to stop the progression of severity. I have an apt with the neurologist but not until 25th feb. Am currently seeing a neuropsychologist re concentration, attention, mind blanks and memory. He seems to think that there is a functional cause to my difficulty i.e psychological repression of things. It is frustrating because yes I do bottle things up but I have genuinely dealt with a lot of the issues in my life. This is a chemical/neuro thing and I just need it to stop.

I realise that in comparison to others who experience far worse re paralysis and pain etc my situation is tiny. but I seem to be educating myself via internet and not really getting anywhere re treatment. I realise that pharmacology has a place but am so scared of going onto duloxetine or any drug. Please help. I’m 30 and have turned into a mess of anxiety - although this is better. Apologies for the length.


Wow - sorry to hear of your situation, I wouldn’t say your situation was tiny, the persistant vomiting must be terrible, whilst I’ve been nauseous I’ve never actually been physically sick with mine, I really sympathise with you.
I too was initially nervous of the meds but as you say ultimately it is a chemical/neurological problem so it makes sense to use meds to treat it.
There are numerous different migraine preventative meds and Toparimate has a reputation for being one of the harder ones to tolerate, so try not to be too disheartened that you couldn’t get on with it - I’ve been there several times already, though I never tried Topa as my neuro said I wouldn’t tolerate it as I couldn’t tolerate propranolol.
SSRI’s and SNRI’s (like duloxetine) are common treatments for migraine and have been effective for many. Personally I couldn’t tolerate 2 types of SSRI’s I tried but found I am OK with a low dose TCA (Tricyclic antidepressant) Nortriptyline and these have been effective for many on here. There are also numerous other possible meds such as calcium channel blockers, Gabapentin etc. So my advice is not to give up trying a new med to find one that works for you.

thanks for taking the time to reply - am considering asking to go onto propanolol due to anxiety - much less than it was due to coming off top but I still crumple at the silliest things and become fatigued. You are completely right. My attitude has always been to just try and get on with it and to minimise fuss but I guess a chemical imbalance needs to be addressed with chemicals. Maybe I need to stop faffing around and just find something that works - does anyone have any experience or any views re homeopathy to treat VM? I don’t know if anyone else has had the experience of having to educate themselves? I’m sure there is an element of that in all conditions but my neurologist hasn’t been particularly informative and GP doesn’t have much experience with chronic migraine with little headache.

Forums like this are great and in the space of 24 hours I feel as though I’m not making it up, not alone and being enabled to make some choices in order to get back to work. Thank you for taking the time to manage this forum mvertigo team! :smiley:

Propranolol was one of the first meds I tried when I finally got a migraine diagnosis, partly because I complained that anxiety had become the most difficult symptom to deal with, It did help with the anxiety to some extent especially at the lower doses. But I struggled with it at the higher doses you are meant to titrate to for migraine prevention (felt too spaced out, tired and depressed and didn’t actually help with the headaches or vertigo).
That’s another thing I’ve learned as I’ve gone along. Some of us are more sensitive to meds than others and need to start at a very low dose and see how we react first, starting at too high a dose may cause an adverse reaction and put you off persisting with a med that might actually be of benefit. In all cases now I usually start the first week or so at half the prescribed dose (by using a pill cutter) to see how I react.
I’m still curious from a chemical standpoint why some of these meds work for some people, or not, as they fall into quite different categories which would imply that the underlying causes of migraine are different for different people.

This condition can be a hard nut to ‘crack’ before finding a med that really suits to get symptoms under control. We are all so different that it really is test and trial. Some are lucky and hit on a good med early on, others need more time to work through. However, most agree that this is a neurological problem which needs meds to sort it out!

I’ve just titrated off Duloxetine (Cymbalta) having trialled it for over six weeks. I started on a very low dose (15mg compounded) & went up to 30mg. It worked wonders for my balance, anxiety & visual vertigo. However, constant nausea 24/7 and ‘zombie’ brain has forced me to ditch it! However, other forum members have found this med to work really well for them without these side effects!!

Topamax (which I also titrated up very, very slowly over six months) has been the opposite. Working well for me. Stopped the mini spins and falling over so will be continuing at 100mg.

Propranolol seems to be a good choice to start before you get to see your specialist - few side effects and helps with anxiety.
I tried homeopathy some years ago (for Migraine headaches), spent quite a bit of money & nothing changed. My advice would be to save your money!!

hi barb,

that’s a shame about cymbalta. how long were u 30 mg for? i would hate for you to give up something too soon to see if the side effects would go away? what % was your balance on cymbalta and topamax?

thanks so much Barb, I cancelled my apt with the homeopathy clinic today after reading your comment. I did think it could get pricey and you convinced me to give Duloxetine a try but I gave top about 6 months and it just was not working for me, although there were significant benefits with balance and I didn’t have so many days when I had to sleep during the day - although I was often very drained and would lie down for some or most of the day.

Your point Sarah is very valid, I guess I’m learning from being on here that you do need to give drugs a chance. I have read in other places that people have bad experiences with duloxetine after as little as 24 hours or 3 days. Generally (I’m an OT) I would say to people that they need to give drugs a chance to level out, however I gave top 6 months and am keen to try other meds if I feel that duloxetine isn’t working. I’m on a tight timescale approaching the point of no pay and don’t want to waste any time. What is a reasonable timescale? I know I normally say to folk 4-6 weeks for meds to truly get in the system. Another thing I was wondering is about having the confidence to say to the doctor about trying another group of meds… e.g how do you know whether a calcium channel blocker is going to be appropriate/worth a try versus ssri’s like duloxetine?

I got an apt through for neurology. I just feel since coming on here I now have a vocabulary and a little more confidence about managing things - can’t believe it took me so long! thanks guys. I really hope you are having a ‘good’ day, whatever that might mean for you. x

— Begin quote from “MCFARLANE92”

I cancelled my apt with the homeopathy clinic today

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Smart move. Homeopathy is frequently discussed as “sCAM” these days. You’d be essentially going to a glass of water clinic.

re my Cymbalta trial - 5 weeks at 15mg and 6 weeks at 30mg - both my GP and neuro (Dr Granot) thought that a good trial.
I feel so much better without the constant nausea and dopey brain! However, now back on a raft and finding it hard to walk in a straight line or stand still. Switching over to Lexapro next week - hope this will be a gentler med & get me back to where I was with Cymbalta without the side effects! Hard to say percentage wise re balance its been so variable over the years with trialling different meds.

McFarlane - good luck with the Cymbalta if you go down that path. I knew as soon as I began this med that it was helping! The first med I’ve trialled that I’ve ever felt that - I felt so ‘grounded’. Sorry, can’t help with your question re calcium channel blocker v SSRI. Are you seeing a good neuro who understands & knows how to treat VM? It really helps to have an experienced VM doctor who can guide you through this maze, depending on your particular needs and is willing to work with you. Often a combination of meds helps so a good doc would know which to combine and what doses work best.